Re: New diagnosis......any advice?

April 15, 2008

Hello very fed up and tired Penny

Even though what you are going through is absolutely appalling, I couldn't stop myself having a little giggle at your message, and the way you wrote it. Your doctors response is absolutely classic, firing pills in all directions in a scattergun approach to the diagnosis and treatment - just like a certain Professor W (who shall be nameless) mentioned in a recent GMC hearing that ALL the different symptoms associated with hypothyroidism should be investigated by different specialists - and who cares how much this is costing the NHS, or what it is costing their poor patients in not getting the necessary help they need.

LEAVE THIS DOCTOR NOW - RUN A MILLION MILES TO FIND SOMEBODY ELSE WHO WILL CARE - and who has the KNOWLEDGE about hypothyroidism.

Can you see a private doctor? Get your 24 hour salivary test done to see where your cortisol and DHEA lie, and at the same time, PLEASE get your Free T3 tested through NPTech to see whether the inactive L-thyroxine is converting to the active hormone T3 or not. I had the severe pains you mention and was unable to move for 2 to 3 weeks at a time when on 125 mcgs L-thyroxine. It was found I was unable to convert and once I started on Armour, the pain went, I regained my health and never looked back since. The past is a horrible memory.

You have to make up your mind Penny, are you going to carry on doing what your doctor (NHS) tells you - or are you going to have to see a private specialist who knows about thyroid, or are you having to go down the 'self treatment' route? This is what the NHS have done to us. As I said, it is really appalling.

Good for you in not getting those antidepressants. Your doctor is yet another one who can only diagnose depression, she needs to know what causes hypothyroid patients to be depressed, and it is a chemical problem, where their brains are not getting the T3 it needs to make it function.

Grrrr!

Luv - Sheila

Hi everyone,Just been back to the GP (even though I said I wouldn't) and she's diagnosed me with CFS....which I'm sure isn't right. I'd appreciate any advice.Basically, my husband called the GP last night because I was a mess. I was prostrate with really bad pain, everywhere, as well as all the usual stuff, puffy eyes etc. I couldn't even lift a cup to drink and the pain was unbearable. The GP asked me to go and see her this morning...so I did (ever the optimist!)Firstly, she noted that prior to this problem I had had very little contact with the GPs surgery. She also said, to her credit, that she had done some reading and had now decided that I have CFS...so she's prescribed me anti-depressants, Fluoxetine Hydrochloride capsules (20mg per day).I asked her how depression could be causing my dry skin, which is now all over my hands, legs and back. She said that was unrelated and prescribed me Alclometasone Dipropionate cream. I asked her how depression could be affecting my eyes. She said that was also a different problem which would have to be investigated. I asked her about the pain, for which the consultant has referred me to a rheumatologist. She said that this was also something unconnected.So, it seems that in a fairly short space of time, I've gone from being a relatively healthy person to a wreck with lots of unrelated, simultaneous conditions!I then said that I had done some reading too and that, especially as the consultant had said that he believed my adrenals could be a problem, was it possible that an adrenal problem could be underlying this and making my Thyroxine ineffective? She said that there was no evidence for this and my problems were unconnected with my thyroid or my adrenals. I asked (again) for a referal to an endo, but she replied that she wouldn't do that as that wasn't the problem.I asked her if it was reasonable to assume that if I was a bit fed up that could just as likely be because I was sick of feeling unwell. She replied that that was fair comment.So....I've decided not to get the prescription for the anti-depressants, mainly because I don't want to add any more unneccesary medication to the cocktail of drugs I'm taking already, and because I really don't think that depression is the problem!I'm still taking the Thyroxine (150mcg) and the synthetic progesterone and treating my candida. I'm also still waiting for the Adrenal Salivary test kit from NPTech (I'll ring them up in a minute because it's been over a week).But, in the meantime, I'd be grateful for your views on anti-depressants and the CFS diagnosis. I'm also having problems now with work. Without a diagnosis it's fairly impossible to continue phoning in and telling them "I'm too tired to come in today!"Penny x (very tired and fed up today!)

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April 15, 2008

Hi Penny,

As you are already diagnosed hypo a further diagnosis of CFS means she doesn't know the reason you feel ill, although all your symptoms are on the hypo list- seems to me youhave a conversion problems and need T3 either as liothyronine or even better in Armour. In you shoes I'd bite the bullet and go private- Sheila has a list of docs who do know more than a GP. I'm concerned that she has ignored your consultants comments re adrenals as this should be addresses before you try Armour or T3.

> thyroid treatment > From: pennysometimes@...> Date: Tue, 15 Apr 2008 10:32:51 +0000> Subject: New diagnosis......any advice?> > Hi everyone,> Just been back to the GP (even though I said I wouldn't) and she's > diagnosed me with CFS....which I'm sure isn't right. I'd appreciate > any advice.> I'm still taking the Thyroxine (150mcg) and the synthetic > progesterone and treating my candida. I'm also still waiting for the > Adrenal Salivary test kit from NPTech (I'll ring them up in a minute > because it's been over a week).> But, in the meantime, I'd be grateful for your views on anti-> depressants and the CFS diagnosis. I'm also having problems now with > work. Without a diagnosis it's fairly impossible to continue phoning > in and telling them "I'm too tired to come in today!"> Penny x (very tired and fed up today!)> > > ------------------------------------> > Messages are not a substitute for professional medical advice. Always consult with a suitably qualified practitioner before changing medication.

April 15, 2008

Penny,

May I suggest you first go to NPTech to get your T4 and T3 done. I did this and it showed that my T3 was well below range (indicating a conversion problem). I then took it back to my GP. They raised my thyroxine but said they didn't agree with T3.

However, in your case, she might realise that you are lacking in T3 and might prescribe it, but I shall be watching the sky for those little piggies flying around lol.

However, if you have your T4 and T3 results and she is not prepared to prescribe the T3 you could once again ask to be referred to an endo to interpret those results if she is unable to.

Lilian

April 15, 2008

> But, in the meantime, I'd be grateful for your views on anti-

> depressants and the CFS diagnosis. I'm also having problems now with

> work. Without a diagnosis it's fairly impossible to continue phoning

> in and telling them " I'm too tired to come in today! "

> Penny x (very tired and fed up today!)

>

Hello Penny,

I too wastold I had Chronic Fatigue, and offered Anti-d's by the Endo I

saw.... Mind you he also said that I was on too much thyroxine and

that he would reduce it once I felt well.... ( Last TSH test showed it

had increased!!! Goes to show what they know)

Anyway, I was angry with the cop out diagnosis he gave and did some

reading... CFS cannot be diagnosed at 1 appointment.... it takes MONTHS

and lots of tests to diagnose it.

I think the GP is fobbing you off personally.

Take Care x

April 15, 2008

Hi Penny

I too got a 24hr urine test from NPTech which showed my T3 was well

below range (indicating a conversion problem). I showed my doctor

who looked at it and gave it back to me. He made me feel as though I

had wasted my money on a phoney test. He obviously did not know about

T3 or conversion problems. When I finally got to see an endo, I

showed him the test result but he ignored it and discharged me as my

NHS blood tests were 'normal'.

I sent a letter to the endo on the 19th March asking him why he

discounted the 24hr urine test - but as yet I have had no reply. I

am now composing another letter to him.

What is wrong with these people. I am assuming they go into medicine

to help the sick but these supposidly caring doctors eventually

become full of hubris.

B

April 15, 2008

> Just been back to the GP (even though I said I wouldn't) and she's

> diagnosed me with CFS....

Thanks everyone once again for your advice!

Sheila, I'd love to go to a private doctor but financing it is a

different issue, especially if I keep not turning up for work! (I don't

have a clue to be honest how much it would cost, and even if he they

did recommend anything would my GP have to prescribe it?) So, I guess

the " self-treatment " route is the only practical option, although I am

investigating an appointment with Dr Peatfield when he's next in my

area (NW).

NPTech are sending out the salivary kit again, so I should hopefully

get that tomorrow. I think your right too about the T3 test, although

where would I be able to get my blood taken and does that cost a lot?

In response to the GP issue, does anyone know where, or how, I could

find a sympathetic GP?

Also, I am genuinely worried about my work situation now. I discussed

this with the GP but she said that as my condition was due to

depression she wouldn't be able to give me a sick note as she

recommended instead that I " worked through my symptoms " as I would find

that that would relieve them. Staying at home would, apparently, make

them worse. Like I have a choice!

Penny x (still tired and in pain, but not as fed up!)

April 15, 2008

Hi

When you send your endocrinologist another letter asking why he chose to ignore the 24 hour urine test when it is well known that this is the test that tells doctors how much thyroid hormone is in the actual tissues, rather than what is floating around in the blood, do ask him to respond within 10 days (put in a stamped addressed envelope). Make sure he knows that you will not rest until you get an answer to this one.

Good luck

Luv - Sheila

Hi PennyI too got a 24hr urine test from NPTech which showed my T3 was well below range (indicating a conversion problem). I showed my doctor who looked at it and gave it back to me. He made me feel as though I had wasted my money on a phoney test. He obviously did not know about T3 or conversion problems. When I finally got to see an endo, I showed him the test result but he ignored it and discharged me as my NHS blood tests were 'normal'.I sent a letter to the endo on the 19th March asking him why he discounted the 24hr urine test - but as yet I have had no reply. I am now composing another letter to him.What is wrong with these people. I am assuming they go into medicine to help the sick but these supposidly caring doctors eventually become full of hubris. B

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April 15, 2008

Hi Penny,

I am horrified at your GPs reaction- working through your symptoms

indeed! She obviously does not know that mood it dependant on T3 levels. Can

you change surgeries and find a new GP or complain to PALS?

Seeing a private doc would cost about £150 depending on who you see, and

then meds would need to be paid for on a private prescription if your GP

doesn't listen. I too thought it was a terrible amount of money, but it has

transformed my life utterly from being gently shepherded around Tesco by my